Saturday, June 3, 2017

It's been a while since I wrote on this blog. Today I was feeling inspired to write because of the Brigadoon Wine and Dash happening tomorrow.

I love the idea of Brigadoon Village. It took several years of great ideas and fundraising to make this happen, but in 2011 they opened their doors for their first camp for kids with inflammatory bowel disease. They have several summer camps for chronic diseases such as congenital heart issues, epilepsy, lung disease, blind and visual impairments and many more... so that kids can be surrounded by other kids with the same issues. I think it's a wonderful idea. Take a look at their website - http://brigadoonvillage.org/camp-schedule/ Tomorrow is their 3rd Annual Wine and Dash which looks like a fantastic event, just wish they didn't schedule it the same day as our event, because I'd love to support this one too.

When we were in the hospital 9 years ago with our girls, losing my babies wasn't an option in my mind. They were born May 12th, 2008. They survived delivery at 25 weeks and were stable, although from multiple brain scans showing severe Periventricular leukomalacia and grade 3 and 4 bleeds and discussion with Dr Vincer, we knew 1 or both girls would have major disabilities. We were starting to prepare for this, and the wheels were turning in my head for running in a large event to help kids with severe disabilities, Brigadoon Village was not around then, because I remember looking into an event through the Sunshine for Kids which is for kids with severe physical disabilities or life threatening illnesses. That's all could think about...how can I help these kids, knowing that my daughter was going to be one of them.

But then things changed drastically, and Jessica was no longer stable. June 9th we found out Jessica wasn't going to survive without the oscillator (high frequency ventilator), and the medications was the only reason she was still alive. Life changing. Heart breaking. Devastating. We had accepted all the challenges we were going to face with severe cerebral palsy, from her brain damage, but it wasn't only that anymore. She had heart damage, she had severe lung damage and severe bowel damage and all of that together was too much. This was the first time in the Neonatal Intensive Care Unit, the thought of losing a child became a reality. We had to make the choice of a) keeping her alive on the machines, knowing that she is suffering, in pain and as the Dr said will eventually start bleeding out of all her organs or b) withdrawing care, but being able to control her pain level as care is withdrawn and stop her suffering. Both options sucked to me. And they still suck in my mind. We will never know if we made the best decision because we don't have a crystal ball, but we made the choice that our brain and hearts told us. And it really wasn't us making that decision as our nurse Sharla said...it was Jessica making that decision by not being able to fight anymore.

These pictures were the only pictures we had of Jessica and Alyssa together. They were too sick to take them out of the incubators together, but our amazing nurses gave us this opportunity on June 11th when we knew our time with Jessica was coming to an end. Imagine knowing your child is passing away and the privacy you have between the next incubator is a small curtain. The only family picture we have is without our whole family. Emily was so young and although she visited the girls, the visits were short because you can't tell a 15 month old to stay in one little area and not go visit all the other babies.

The redevelopment of the new Neonatal Intensive Care Unit will allow this. I would have loved to have a picture with my entire family. The new NICU will give you this privacy to allow your younger kids to have that space they need. You will have a door to isolate you from the rest of the world during difficult times. It sounds so small, but when I think back, it is so huge.

The IWK staff did everything they could at the time to support us and provide as much privacy as possible. We had a family room where Emily could come and stay, but we couldn't bring Alyssa out of the NICU because she wasn't well enough.

The pictures above were our last day in the parent room. Emily was giving Jessica kisses. I want everyone to know where their money is going by participating in our event. By supporting the IWK 5K - In Memory of Jessica specifically for the past 2 years - that $50,000 has gone directly to improving the NICU so families in the future will truly have the best care. What I love about the IWK, is they listen. They listen to the patients and the families on how to improve care and to provide the absolute best care. Because of all of you, things are happening. The rest of the money raised this year and every other year goes to the IWK Foundation which provides the necessary funds to continue to provide the best possible care with the newest equipment and research. Last year the IWK Telethon funded 2 CADD pumps for patient comfort to allow patients to control pain and comfort, leading edge technology stools for surgeons during complex surgeries, life saving equipment such as patient monitors to alert staff of vital signs and threatening conditions and stronger families by funding for loungers for a second family member to stay with their sick child.

I always want to say all of this at the event, but I don't have the courage, or the time, so like to share here.

The IWK 5K - In Memory of Jessica has many dimensions. We bring community together. We promote active living within our families setting a great example for our kids. We remember Jessica, and we really help Maritime families receive the best possible care, the care they deserve.

About Me

I started this blog in March 2008 when I found out that I was pregnant with twin girls diagnosed with TTTS. Because it was so exhausting and emotional for me to tell my story over and over again, this blog became my communication for family and friends. It's been a long journey with a very scary pregnancy, the roller coaster ride in the NICU, the loss of one of my babies, and trying to be a good Mom to my 22 month old little girl at home. Time does not change what happened, but it does help to heal...but for me, my saving grace was running. I started to run regularly after Alyssa was discharged from the hospital Sept 2008, and now I can't stop.

TTTS Donation Page

A child that loses a parent is an orphan.A man who loses his wife is a widower.A woman who loses her husband is a widow.There is no name for a parent that loses a child, for there is no word to describe this pain.